The Journey of James Weston

Monday, June 14th, 2021 James had kind of a rough night and morning. He seems irritated either from the wean of Methadone, reflux, and/or gas. Sometimes though he is just being a baby and wants to be held!  Today the hospital was getting inspected by the Joint Commission. We've been hearing that they were coming for months but didn't know the day. James was one of the two chosen to be interviewed by them and so was his nurse. We all passed! Lol I think we threw them off with Timmy the Trach Doll sitting in the swing. He needs his own room. Joint Commission standards are the basis of an objective evaluation process that can help health care organizations measure, assess and improve performance. The standards focus on important patient, individual or resident care, and organization functions that are essential to providing safe, high quality care. To give you an example, here are a couple of memes about the Joint Commission and how nurses typically feel about their visit. Lol Ove...

Sunday, June 13th, 2021 Updates: Started Robinul back at half dose due to too many secretions. Received PRN dose of Morphine due to wean of Methadone. He was very irritated. Auto Mode increased to 2 hours during the Day shift and 1 during Night shift. This weekend James started Calcium and Sodium Phosphate due to the healing fractures recently found. We found that when these combine they form an insoluble white solid. James had another bath today. His Primary sung him Head, Shoulders, Knees, and Toes and held him while he was going through withdrawal. Mom and Dad came back from their staycation. In the evening we had a family sleepover. First time all 3 of us slept in the same room. Probably won't do that again since that also means no one got any sleep. P.S. You can email James your love and support as often as you’d like. Mom and Dad read these emails to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com

Saturday, June 12th, 2021 Updates: On Monday, James will be getting an echo to check for pulmonary hypertension. If he is cleared then we'll be able to move forward with scheduling him for a hernia surgery. At this time they will also do his circumcision and put in his new MiniONE button for his G-tube. James has been doing excellent on his auto mode!! Twice a day for 1 hour each (or maybe 2 hours sometimes 😊) Mom and Dad were able to spend sometime together this weekend outside of the hospital (but still visiting everyday). For day shift, his primary nurse dressed him in a cute outfit she bought him. James ended up having a big diaper and got the onesie dirty so he spent the day in his shorts. Cute little shorts! We all agree there is nothing cuter than pants or shorts on a little baby! Mom and Dad were happy to know that his primary nurse and favorite RT had a great day with him! They stopped by in the late afternoon evening so they can also be there for a shift change. We knew ...

Friday, June 11th, 2021 Only changes: Temporarily held  off on robinol due to thick secretions not coming up. Increased Auto control mode to 2x a day (1 hour on day and night shift) Another new nurse last night and kinda again this morning. Basically the last 3 nurses we've had never had were new to James. Today our nurse had James once on January 24th. Why do we remember? Because it was the last Bucs game before the Super Bowl. Everyone working that day was focused on it and it wasn't the greatest experience. Below is a picture so you can see what he looked like comparatively. He was so tiny! Do you think there have been some changes? Just a few things! 😂 It's hard when they don't know your baby and needing to explain everything over and over. Report doesn't give enough information.  Overall the day wasn't great. Just one of those days where Mom felt like she could do this at home, because she did everything on her own. She never felt comfortable leaving the r...